Fear of Failure: My Baby’s Journey to Gluten Free

Contributed by Robin Fecso

I have a workout shirt that I have kept for many years. The message is very simple, it states, “Fear Of Failure”. People have often asked what it means, and I always explain that it’s motivation to reach my fitness goals. The meaning of this shirt became an entirely different type of message the day I found out about my son’s inability to grow.

It was all smooth sailing during Nathanael’s regular doctor check-ups, until that darn height and weight chart would make an appearance. I always hoped that the current visit would yield a better growth reading. He had always eaten well, and was drinking his bottles just fine. Yes, he would spit up here and there, but nothing that alarmed the doctor. After reviewing her calculations, the pediatrician regularly grimaced at that chart and told me that my baby was still in the negative percentile. Ugh!

I will never forget the day when the doctor took one of our visits a step further. She looked up at me, with my ten-month-old in her arms, and said “I’m starting to see a ‘failure to thrive’ situation here, and we may need to get this checked out at the hospital.” Cue the arrow that went through my heart.

Failure to thrive?

No parent would want to ever hear those words being uttered about their child’s well being. My mommy guilt-o-meter filtered those words as: ‘failure to be a good parent’ and ‘failure to keep your son healthy’, but the next sentence really shook me up…

“We may need to get this checked out at the hospital.” What could be wrong with my baby?!

After many hours of consulting with the pediatrician and the gastroenterologist, Dr. Bella Zeisler, it was time for my son to have his first endoscopy at the Connecticut Children’s Medical Center. I never really liked hospitals, as I have dealt with my own medical issues over the years. But when the hospital visits involved my own child, it was an entirely different can of worms. I was a nervous, sleep-deprived wreck.

When my son’s GI doctor called us in the hospital waiting room after the procedure, I couldn’t get to her fast enough. She quickly assured us that all had gone well, but that she had seen definite signs of inflammation and lesions along my son’s esophageal walls. The fear of failure started to bubble up inside of me, again, but Dr. Zeisler (a mom of two children) instinctively took my hand and said, “your child is going to be ok.”

Thank you for that.

Soon after, the endoscopy lab results confirmed that my 10-month-old had Eosinophilic Esophagitis, also known as E.E. A treatment plan was immediately put into place. He was first put on the medication Prevacid to immediately help with the disease. We then were assigned an extensive elimination diet along with a special allergy-free baby formula, which provided Nathanael with his daily fluids. The elimination diet was no joke, and my first grocery store experience was a nightmare. I had to fully inspect each food item’s label and compare it with the huge packet of information on the various allergy-induced food groups we had to either avoid or maintain. Each allergy-induced food group had many types of names and scientific titles that I had to decipher and determine whether it was safe or not. All of the above, along with a cranky, tired and probably very hungry baby in tow. Not fun.

A normal 30-minute trip to the grocery store would take up to two hours, which left me stressed and reaching for the nearest wine bottle when I returned home. Not only did I tote around a diaper bag to our mommy group play dates and outings, I also had to carry an insulated food bag of all my son’s meals as well. To finish off the week, I had to send a detailed calorie-counted meal log to the CCMC nutritionist based on my son’s food consumption (where’s that wine bottle).

Once Nathanael had been on this elimination diet for several months, we were scheduled to go back to the hospital for another endoscopy. The procedure’s results would tell us what food groups to replace or remove for the next several months. This cycle went on for two years. Most of the results came back with no significant change. My fear of failure would creep back in from time to time, but the nutritionist and the GI doctor always reassured me that things were going to get better and that I was doing a great job.

And, like they said it would…it did.

After eliminating gluten for several months, the scope came back with exciting results. They looked clean and healthy. My husband, Dr. Zeisler and myself were like giddy school kids as we looked at the scope images. We made a few more adjustments and scoped a few more times, but we knew we had the culprit.

At Nathanael’s three-year-old checkup, I remember when the pediatrician took out that blasted growth chart. She took the measurements and paused before telling me the results. My fear of failure began to creep in, but quickly washed away with the doctor’s huge smile as she showed me that my son was in the 15th percentile, in weight, and 20th percentile, in height. This was some much-needed news!

Even though the fear of failure made me one crazed mama for several years, it was my baby’s health that kept me motivated and inspired. Since I began writing for a family and fitness blog, called Runitlikeamom, it has been my mission to find a healthy life balance, with the help of amazing like-minded people (and moms). Through my fear, came hope – hope that was given to me by these like-minded moms; made up of doctors, pediatricians, nutritionists and hospital professionals. It was these people who had made a difference for my baby. They helped him to become healthy and to keep smiling, like this…

…and now this.

Robin Fecso is a graphic designer and small business owner of a design, development and branding agency, Jumpstart. She is a Connecticut native, Runitlikeamom blogger, trail runner and proud mom of a wonder boy super hero! Robin can be reached at robin@c2js.com.

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